tag:blogger.com,1999:blog-3500936220214961312.post3001987140098285017..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Trying to Plan Ahead is ExhaustingLisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-3500936220214961312.post-2371751974194193852009-11-07T12:00:12.564-05:002009-11-07T12:00:12.564-05:00Ok, yeah I read same release, yeah, I got a person...Ok, yeah I read same release, yeah, I got a person who shall remain un-named to tell me he went to Genetech, see, his daughter was starting college nearby, but he kept his house (and wife) here, Genetech releases at the time pronounced him as researching eye problems, which he loves doing. I still hope he is a decent man, but I hate lies and half-truths to cover what is uncomfortable to those who hold power over you.<br />Oh, YES, she sooo just dismissed you initially. I hate that crap too. ADMIT to your error, apologize, and stop blaming the patient! (I get this all the time. With age and wearing down, I let it pass.)Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-87934724917353184852009-11-06T23:42:37.402-05:002009-11-06T23:42:37.402-05:00{oops, I gave the wrong link in my haste.}
Haha, ...{oops, I gave the wrong link in my haste.}<br /><br />Haha, Diane. I just saw your comment come through in my email, then I came to tell something else. But then I noticed that I forgot to put a link into my comment. Look here - http://www.novartis.com/newsroom/news/2009-10-19_ms.shtml<br />It says that he came from Genetech where he was the medical lead in clinical neuroscience and development programs, including MS. Also former president of the Seattle MS Hub and director of the Swedish Hospital MS Center in Seattle.<br /><br />This morning I got a phone call from the hospital infusion center. The woman tells me that I am scheduled for Nov 12.<br /><br />I say, "no, I'm not. I'm scheduled for Nov 19."<br />She says, "nobody called us!!"<br />I say, "YES they did. I called you!!"<br /><br />This was the same woman who initially dismissed me because she said that my rheumatologist had not faxed the orders over. She is also the same person I spoke with when I called to change my schedule.<br /><br />Now, ask me. Do you think that I believe she never had those orders in the first place? Too quick with the "I never received....."Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-62922377358053030742009-11-06T23:40:25.322-05:002009-11-06T23:40:25.322-05:00OK< I don't know if I read THE press releas...OK< I don't know if I read THE press release but I read A release, "president of the Seattle MS HUB" ???? Wow! That's a first. I guess denials only happen when convienent. But to BRAG about THAT? That ratty excuse for a doctor's office? I'm speechless. I guess he is every man, and a real devotee to those with MS. N O T!!!Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-49374959165812682502009-11-06T23:30:28.285-05:002009-11-06T23:30:28.285-05:00Lisa, O M G. UGH OMG I...I...et tu Brutus, he keep...Lisa, O M G. UGH OMG I...I...et tu Brutus, he keeps...amazing me. Oh, Lisa....I...I can't. He would sue me if I spoke the truth about...things I know. AAARRRTGGGHHDiane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-55488882283797230362009-11-06T10:11:43.583-05:002009-11-06T10:11:43.583-05:00Lisa, my mom has Lupus. She's on an infusion b...Lisa, my mom has Lupus. She's on an infusion but will start Rituxan soon. <br /><br />I understand the self-imposed fear of being without your Copaxone. I had the same fear in May when I had to "ration" my injections because I didn't have enough until Shared Solutions came up with a way to give them to me free. <br /><br />It was impossible to pay the copay under Plan D! 33%?Have Myelin?https://www.blogger.com/profile/05704037582961814202noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-13940503530312784432009-11-04T22:48:43.060-05:002009-11-04T22:48:43.060-05:00Lisa, if it makes you feel any better, I've be...Lisa, if it makes you feel any better, I've been off my Copaxone for near a year now.. shhh.. :) Started as a money & insurance coverage issue, then found I was actually feeling a bit better without it.<br /> <br />I've not had any further problems, and haven't gotten any worse symptom wise *fingers crossed*<br /><br />I don't think its going to totally mess you up to be off it for a few months even. Especially if they are the ones that suggested.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-15363281103846686912009-11-04T20:52:18.575-05:002009-11-04T20:52:18.575-05:00Holy Moly!!! What a pain in the butt! Halfway thro...Holy Moly!!! What a pain in the butt! Halfway through I was starting to get a headache, I can only imagine how you feel. Woooh.<br /><br />Side note: I'm supposed to be getting my Copaxone tomorrow. I told the hubs that I wanted to start asap (after seeing the nurse of course) and he asked if it could wait until the week of the 17th when he'll be off and able to learn with me. Um...NO! LOL! <br /><br />I'm already making myself crazy about what going on in there. Does the Copaxone stay active for a while? Probably not since you have to inject everyday.Sarahhttps://www.blogger.com/profile/00124984019558481189noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-15494534176723293062009-11-04T15:55:33.418-05:002009-11-04T15:55:33.418-05:00LOL. Thanks Diane. I haven't really noticed an...LOL. Thanks Diane. I haven't really noticed any difference in MS symptoms without the shots. Perhaps everything would work out great. Of course, I do believe that it will.<br /><br />Hey, about that famous (cough, cough) former MS doctor of yours. Is there any chance that this is him, recently hired by Novartis. (press release)<br /><br />A Dr. Craig Smith perhaps?Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-43670608250233455052009-11-04T15:28:48.143-05:002009-11-04T15:28:48.143-05:00LOL, sounds like my daily planner! Hey, I went off...LOL, sounds like my daily planner! Hey, I went off Copaxone a few times and my super-famous (uh-huh) neuro told me "not a problem" -- something they have no data on, huh? LOL Or as one neuro said after I'd been on Copaxone for many years, when I asked about going off: "Well, your immune system has already been modulated." (HUH????) I think you are right to try the RA drug and maybe the Copax break will do you good! I mean, who knows? Enjoy your breaks, glad to see them in that schedule!Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.com